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Comments on: "The Morgellons Research Foundation Shuts Down" (46)

This is most unfortunate, as they had some good information that was useful to bring to their doctor if one wanted to educate them—case studies, etc. She lent credibility to this movement.
Sorry to hear the site is down.

Hi I just register as having Morgellons at the Oklahoma Site giving my stats. I did not register prior out of fear. I think everyone should register so that we can get the true numbers of the people infected with Morgellons. Ruth

Hi, I have also registered at the Oklahoma State University site. I agree with Ruth that we need to let them know how many of us are affected by this. There is also a section for friends and family who know people that are affected. I think I will send this to everyone I know to get them to fill it out for support.
Thanks,
wendy
P.S. here’s the link to register https://centernet.okstate.edu/morgellons/registration.cfm

maybe we could get the people of vietnam to set up some check in post for us….maybe france…. im sure any money comming from the federal government is a big concern to the dean weighing the back lash well what can you say…. these government officials must be waiting for something good to come of this mess .. i really look at all the promise of this stuff ,it sounds so good , almost too good to be true well …my dad told me if it sounds too good to be true just walk away….just walk away

they had credible research from Suny… they should have made sure the research from donations stayed available for all. Dr Wymore has yet to show his work failing to find agro… not saying he did or did not, just saying it is professional to show your work… transparancy…

So lets great the next phoenix rising out of the ashes..to reflect 2012 ideals..of standing up to be heard..see wayseers.com…manifesto….lets welcome what fills the void. Nothing can hold down the pure human spirit
WE just need to hold to our values of being truthful and living with integrity..and being kind..because it’s a better way to be…but not blind.
Hopefully Wymore has all their data.
Same with the Body Bugs people..and abrupt shut down seems to be the norm.
Thank you to all those who hang in there giving a life-raft to those in need of encouragement and caring.
Sincerely, sherry Taylor

In my mind, this somewhat confirms who is working with whom. I noted once the CDC came into the picture back some years ago that the growing tally of suffering families on MRF site flattened. Now that the CDC has washed it hands, it appears MRF will follow. These organizations benefited financially from the suffering and have blinded the general population from the truth. Instead of confirming and building an understanding of this condition, statements are made of “They appear to be suffering from something”.

I suspect Randy and his gang won’t get beyond looking at the fibers. I was in touch with one of his researchers four years ago when I was researching the historic symptoms set in connection to mercury and, when I asked about looking at toxicity, was told, “It’s all about time and money”. This condition is systemic and all symptoms need consideration.

While I can forgive all of these folks for distorting the truth, first they need to step up to the light and speak in honesty. I hope and pray they will. It is time.

joe was if anybody heard of the FDA 7. saw a little note that they had been fired for trying to spill the beans on what was going on but thats all they said and i dont know where i read it….i feel this thing is ready to blowup because so many countries and states are rejecting the gmo crap–hawai vermont california and all these senators and congressman are probably ringing there hands just waiting for a hearing …i just have a feeling and im usually not wrong…remember i m psychotic i mean ha ha psychic…and they dont distort they lie when anybody in government opens there mouth don t ever expect anything but a damn lie…..somewhere around 64 the government changed…..it would be a relief just to here the truth for o n c e…

It’s seems sad when something like this shuts down. I think OSU getting their funds is a good thing. I don’t know if MRF was doing much research any longer anyway, were they? What we need are those who do know and validate M as a real disease, to all work together.

Background: Morgellons disease is characterized by dysesthesias and dermatologic lesions that range from minor to disfiguring (Savely VR, LeitaoMM, Stricker RB. Am J Clin Dermatol 2006;7:1-5). The disease has been reported primarily in Florida, Texas and California. Although an infectious etiology of Morgellons disease has been postulated, treatment of the disease remains problematic, with many patients having inadequate responses to antimicrobial therapy. Skin biopsies of Morgellons patients reveal non-specific pathology or an inflammatory process with no observable pathogens, often with fibrous material projecting from inflamed epidermal tissue. Morgellons skin fibers appear to contain cellulose. This observation indicates possible involvement of pathogenic Agrobacterium, which is known to produce cellulose fibers at infection sites within host tissues. Methods: Skin biopsy samples from two Morgellons patients were subjected to high-stringency PCR testing for genes encoded by the Agrobacterium chromosome. Screening of the same samples for Agrobacterium virulence (vir) genes and T-DNA sequences in the patient’s genome was also performed. Results: PCR screening indicated the presence of Agrobacterium genes derived both from the chromosome and from the Ti plasmid, including the T-DNA, in tissues from both Morgellons patients. Conclusions: Our preliminary results indicate that Agrobacterium may be involved in the etiology and/or progression of Morgellons disease. If these results are confirmed, it would be the first example of a plant-infecting bacterium playing a role in human disease.

Further testing is ongoing to validate this observation and to determine whether Agrobacterium not only resides in the infected areas, but also transforms them genetically.

Research Update, January 14, 2007
Vitaly Citovsky, Ph.D.

Our continuing screen of additional Morgellons patients has identified Agrobacterium genetic material in three additional individuals. Thus, all Morgellons patients screened to date have tested positive for the presence of Agrobacterium, whereas this microorganism has not been detected in any of the samples derived from the control, healthy individuals.

(We would like to thank Mark Darrah, Research Director of the Morgellons Project in Dr Citovsky’s lab, for arranging for the SEM imaging which was done at the Materials Science and Engineering Dept, Stony Brook University. Dr Citovsky’s group, under the direction of Mark, is continuing to research Morgellons disease and we will share new information from his group as it becomes available to us.)

Every organization that has something to do
With morgellons either no longer active or extremely quiet. Never heard anything from anyone in regards to the most recent morgellons
Conference that just took place in Texas…

Hi JS…we do our best to distribute information through newsletters, press releases and actually have DVDs of the conference available on our website. I would like to urge you to sign up for our newsletters. It may help you to stay in the loop. We have done 3 press releases since the conference and a Cooke of articles have been written about the conference. Her is the link to one article that was published by Public Health Alert.http://www.publichealthalert.org/Articles/harrietbishop/Morgellons%20congerence.pdf

I had been thinking the same thing that JS had! Very little is going on in regards to Morgellons. Since the Conference and the article connecting the bovine disease to what is happening in patients with Morgellons, it does seem that there has been little discussion, support, etc. Especially on THIS site, where discussion and debate were daily occurences. I have been having terrible ongoing breakouts, and with no one out here to talk to, it is really much harder to deal with. I have to say, the disease is getting progressively worse. July 27th will be the one year anniversary of my discovery of what was going on in my body.

I had experienced several of the symptoms over a period of years, but when they all came together, and brought some new friends, I started my research, and found Morgellons. I have tried to talk to two doctors without luck. I’ve tried several methods of “treatment” that I’ve read on this site and others. But I’m not getting better.

I even have video now, of long metallic looking fibers that I have pulled from my back that have moved in a swaying or jerking motion for up to 2 days after coming out of my body! And removing them hurts! Yes, this sounds impossible and crazy. I would be the first to admit that. It’s why I made videos.

I rather feel that I came in on the tail end of all the discussion and treatment trials, and everyone is just dropping by the wayside. I don’t know if they’ve given up entirely, or are just fed up with talking when there is no end in sight!

It took me a while, but I finally figured out how to photograph the fibers and other objects that came off of or out of my body. I have a flash drive with more than a hundred photos and videos. But no one to show it to. No one cares.

My ferret died after suddenly losing all of the hair around his mid section, and scratching like crazy for a couple of days. After he died, I found a reddish brown scab appearing spot on his abdomen. I put it under the microscope, and saw black fibers, and other things in it that I have seen come from my own body! My Pug has black fibers come from his eyes. Yet, there is no treatment, no real recognition of the disease.

I have accelerated from tiny black specks in white to grayish goo coming from my eyes to large black fibers, and an almost constant blurring of my vision. When I mentioned the little black fibers pieces to my optician, he said, “Hmmmmm,” and walked out of the room. So much for medical curiosity.

I have so much in my life that is important to me, and a job I enjoy. But I feel that this is going to end up killing me. Globs of fibers lodging in my arteries, or in my brain. Not a nice thought, but I have no other, as the progression has been so rapid in the last year. Sleep is very long in coming, due to the constant sharp stabbing and itching in my ears. This is one symptom I’ve had for several years, but had no idea what it was. Nothing showed on a q-tip, and I had no microscope or reason to feel that I needed one back then.

Three of the fingers on my left hand have been numb or tingling this past week. My ears have been shedding stuff non-stop, old lesions have been itching, my chin and the area around my lips have been itching, sore, and have expelled fibers, red seed looking things, and what looks like little sticks! Who wants to hear this? Who wants me to touch my own grandchildren after hearing even parts of this? I’m lost out here and feeling all alone with this.

Marsha I m so sorry to hear that u re still suffering so much, I feel your pain, first of all
You are not alone with this, I know words won’t
Make this to feel better, but one thing we
Can’t do is to give up hope. There is a possibility of Lyme and morgellons connection
As also Marsha article points out lots of people
With Morgellons do test positive for Lyme, as
Some of the symptoms you mentioned could be Lyme and its worth testing it as you are not getting relief with other things you have tried for morgellons. I know things been quiet all around
But I want to believe that lots going on behind
Doors to find out what this is, just hang in there …

Don’t know if this helps you, but it releived my symptoms quite a bit. I only use my bath towel once, then wash the load of towels in hot water using Tide, Color Safe or regular bleach. Very important; hot dryer until completely dry. Change sheets once or 2ce per week. (I started out washing them daily.) Treat sheets same as towels, Do not wash any of your clothes with family members or friends. I switched to Dial bath soap, the original gold bar soap, to bathe. After lathering, I turn water off and leave soap on for 3 minutes. I wash and rinse with really hot water, followed by very cold water. I treat all leasions and rashes with Blue Star Ointment, usually 2-3 times a day. Every morning, I put my pillows in the dryer, on hot for 30 minutes. Whenever I have an itch, instead of scratching, I rub on the Blue Star. I only wear clothes once, then they are washed and dryed before wearing again. I store all my dirty laundry, separate from family’s, in plastic garbage bags. Having very dry skin, I put Avon’s “Skin So Soft” original oil in my body lotion. You could apply it full strength to skin, as directed, but it’s too oily for a lady’s work clothes (for me). One friend suggested a way to cleanse my blood: first thing in morning squeeze juice from one lemon, microwave till hot, flavor/sweeten with honey, and drink before eating or drinking anything else. I believe it worked, but I love my coffee too much, and I am not a morning person, so I quit. I have been dealing with this for 9 years now. I have also noticed, it disapears when I spend a lot of time out in freezing weather, or in a steam room or hot jacuzzi. It went away completely for a whole 2 weeks when I spiked a fevor of 102 degrees. Good Luck! Hope this helps.

Yes…JS. As far as treatment right now…it is the Lyme Doctors who are taking this seriously and researching this. If you are unable to attend our conference, then watch the DVDs from the conference. You can use these to educate you you family, friends and doctors. Read the articles in newspapers and have your friends read them. I know everyone is sick. I have a horrible case of this ….full blown all over my body since 2003. My life is dedicated to this. I promise you that I do all I can. I put a portion of my disability check to this very cause every month. I wake up working on Morgellons and go to bed working on Morgellons. I feel that Kennedy speech and have to say “ask not what more a foundation can do for you. Ask what you can do for your foundation. Your skills are needed. Attend our conferences if you are able and show some support. We need it more that I can ever express in words. Help us circulate the peer reviewed literature. If you are too sick, then find a small project that you can do. I am literally up to my ears in Morgellons. I am not complaining. I am trying to do what I can to help make a difference. I too am getting progressively worse. It may be too late for me as I have had this a long long time but I am dedicated to doing what I can. I do my best as do the others who volunteer for this cause.

Hi Cindy
Sorry to hear that you are not doing well either.
I also had a period that felt better with my morgellons symptoms but starting to get very
Sick with neurological problems, sever headaches, dizziness neck pain, blurry vision, eye pain, stuff neck, difficulty moving my exteities and I can go on and on… And after
4 months of culturing my blood and testing for many coinfections finally found out I have
Chronic Lyme luckily I m seeing an LLMD
And she told me IV ABX is the only way I can go at this time. So I had the Hickman put in yesterday to start the IV therapy soon. What u say about everyone needs to get involve I totally agree. Just some of us are sicker than others but as u said I been educating everyone around me and passing the word around, so at the moment that’s all I can do and burly go on with the day to day things in my life. Like you I m also committed to this cause for life I don’t think you can just walk away from this after what we have experienced. God bless you for what you do hope you feel better and they find a cure for all of us soon.

Hi Cindy,
I just stumbled upon Judith Knilans, ND wordpress site.
In late September of 2011 I had a lobe of my lung removed due to cancer. I have never smoked or been around second hand smoke. I requested that the tissue from my lung be examined for fungus. It took several weeks but the results finally came back indicating that I have Scopulariopsis Species. This fungus can grow in skin, sinsuses, nails, and for me it goes into the lungs too. I have left the conventional medical doctors feeling at a loss since they really never believed me when I had been telling them all along I had a systemic fungal infection. Now that there is actual lab proof of it they still have no idea of how to treat it! So, again, thank God I know a few things about alternative therapy because if it were not for that I would have no help whatsoever. I am going to be using blends of essential oils, lights, PathogenX liquid and I feel I will overcome this fungal disease. Now that I know what I am aiming at I feel I have a better chance to win the fight.

Scopulariopsis is a fiber forming fungus. It is a large group comprised of a number of species commonly found in soil, decaying wood, and various other plant and animal products. Indoors Scopulariopsis is found on damp walls, cellulose board and wall paper; wood; floor and mattress dust; wooden food packing, shoes, carpets, swimming pools and sometimes found growing on meat in storage.

It makes perfect sense to me now in making the connection between Morgellons and being a person infected with Scopulariopsis and what I have referred to as “the fiber disease” because my body emits fibers. It is part of the Morgellons symptoms. So does that mean all people with “the fiber disease” really have a fungal infection of Scopulariopsis? Maybe, and maybe not but it is worth trying to get a proper lab identification. It has taken me 16 years to get to this point! I certainly hope I can help others make their discovery in much less time.

Can someone who attended this Morgellons Conference tell me who made the statement “mercury is definitely not the cause of Morgellons”? If mercury has been ruled out as cause, I would like to review the proof. Thanks, Joe

Oh maybe it was in the Open Question/Answer part. There was some discussion about it then I think. There were some in the audience there who had been through the “Amin treatment” and they shared insightful experiences. And the panel talked about how evidence is what leads to theories etc..etc..about scientific methods.

Dr. Amin’s theory relates to dental adhesives. I did see a recent news segment where he mentioned mercury as cause for one case. What I would like to know though is the science used to determine “mercury is definitely not the cause.”

Dr. Dietrich Kleighhart has presented some studies which suggest the lyme disease related bacteria is often passed from mother to fetus. If this is the case, many of us may be carriers without knowing. This makes me wonder if bacteria pop. may be influenced by levels of mercury; if so, lyme bacteria presence would be a symptom and not cause.

Studies have shown currently accepted testing of mercury levels is not accurate (see “Is dental amalgam safe for humans? The opinion of the scientific committee of the European Commission” Mutter J. J Occup Med Toxicol. 2011 Jan 13;6(1):2). Honestly, I hope we have ruled out mercury…this would be a great relief to me! If, however, the proof is not solid, a professional panel discussing should not present opinion without validation.
.

Hi Joe,
I think there would need to be some strong evidence showing that Morgellons patients have a higher mercury than the general population and to my knowledge that has not been presented in any scientific publication.
Science has to follow evidence. The case definition of Morgellons does not mention a high mercury level as a clinical finding. I know you feel that the current testing is not accurate but mercury levels have been tested by conventional methods and there has been no incidence of higher levels found specifically in Morgellons and lower levels in control groups. I don’t know of any studies on the glutathione markers you have mentioned as present in Morgellons and Lyme and not in the controls. I hope I am making sense about this. These kinds of studies take a long time. I just think that there needs to be a reputable source of research that determines Morgellons patients mercury levels were higher than controls. It would then need to pass peer review and be published. The current case definition did not find mercury as a culprit. Maybe you could contact Ginger Savely since she did the work on 122 Morgellons patients which constituted the first publish case definition and the break down their lab values and ask about the mercury levels in that group.
I’ve heard several talks at conferences that discuss heavy metal toxicity as impeding improvement in people who are undergoing treatment for Lyme and co-infections but even that is debated and not much in the literature.
Cindy

Hi Joe
Mercury poisoning was one of the the first
Things I suspected when fell ill with MD. So
I went ahead and removed several mercury
Amalgams holisticly and detoxed my self from
Heavymetals. For me this did not resolve my
Condition. Eventhough I believe mercury could
Compromise your immune system leaving you
Susciptible to any infection such as MD, I personally dont think is the primary cause of this illness. But then again that’s just my opinion. You’re work and reports are very impressive and
There is lots of valid points in them to be looked at.

Ditto for me on the mercury removal. Though Dr Klingardt did mention testing for mercury is different than other heavy metals. One needs EDMA in the system to bring it out. My heavy metal testing was done with EDTA (which works for all other heavy metals) I did not know about EDMA at the time of testing.

He also said nearly everyone tested had parasites.

Another gem I gleened from Dr Kinghardt is that to do proper Lyme or any spirochette testing to treat clinically for 2-3 weeks before testing. It drives the pathogens out into he open apparently.

You might want to look at the Mutter article I mentioned above (found on pubmed.gov). Mercury is best kept out of our bodies (whether dental, mining run-off, cosmetic, etc.). Cleaning mercury out of the body takes a long time (Alison Adams estimates 2 years). My research is primarily speculative discussion of patterning connecting Morgellons to mercury; it is not conclusive. If the research proving or disproving mercury as cause has already happened, I am very interested in reading it. Cindy mentioned contacting Ginger Savely and I may do this. I think reading the published form would be best though.

No comments on the fiber producing fungus? It took the Mayo clinic 4 months to identify it. Can somone contact Judith Knilans on her wordpress blog HomeHealingnaturally? I cannot as it will not accept my email address when attempting to register. January was her last post where the second fungus was identified.
Scopulariopsis filamentous fiber forming fungus, known to infect skin, sinuses nails and lungs. Found on damp walls, dry wall board, rotting wood, etc. Also found in slaughter houses.

Fungus is used in Genetic Engineering. It is also used in some areas of farming as a pesticide.

Sharon Agraquest was just sold to Bayer in Germany.500 million ! The shell game will win ,looking for that pea will be vert tough. Why don t you see if Landinex is the common biopesticide behind this . Scopulariopsis filamentous ,wonder if it a type of Oomycete? Too bad Colon Powell didnt run I would have voted for him. I really think this country is lacking any leadership and hasn t had a real leader inmany years,. Mr C your time line is a little off I think were one line away from a communisitc country if were not ther already. We really need to get rid of the electorial college and go back to one man one vote.

Thanks to all for interesting posts and comments. Joe, do remember too that article was written by a conference attendee. I don’t personally recall hearing that mercury is ruled out because I don’t think any of these speakers have ever presented any evidence that it was ever a theory …not as far as theorizing mercury as an etiologic agent. Still I commend you highly on your work regarding potentially possible mercury component. As you said…evidence should be gathered. Your work is impressive as very well written speculative discussion. I don’t know if you ordered DVDs bit I bet ou would be interested in hearing the entire conference if you haven’t already.
And still the agrobacterium thing lingers in the backs of all of our minds. Even though further research found samples from the same patients to be negative. I think Citovsky spawned the who GMO theorizing although he Himself did not think GMO played a role. Currently I’m leaning toward finding the spirochetes as our best be going forward. That is where the evidence is leading in my humble opinion.

Cindy, There are many different perspectives on cause. There are areas where all of us looking at Morgellons agree. First, we all know (especially those of us who have/had symptoms) there is nothing delusional about it. Secondly, we have generally come to understand the symptoms. I think it would benefit everyone if all came together to discuss those pieces of this we agree on. Sharing might get all of us somewhere.

Communication, collaboration and staying involved is key to being able to continue to move forward. Research is picking up speed and also gaining acceptance. It’s been a slow process but look at what those Australian docs who studied gastric ulcers went through. I guess nothing comes easy. Gathering facts and then building upon the evidence. Yes, it has been a roller coaster ride. And I have never been a fan of roller coasters. But that’s what it feels like.

Hi Cindy
Was wondering if you or anyone knows where
I can find the Japanese documentary in regards
To Morgellons, I know it was suppose to be out
In January and I think I read somewhere that was played at the conferance.

My name is Vanessa and I have been through the ringer for the last year. Seen well over 50 different doctors including the Mayo and the University of MN. Nobody can give me a straight answer to what is wrong with me. After bombing my apartment 3 times, throwing away furniture, bleaching my walls, professionally cleaning my carpets to doing rash things like using products that will give any kind of comfort to the recurring sores my body is plagued with. I have been to infectious disease specialist, and ENT, allergy specialists, and even an oral specialist for answers. Plus the many, many, dermatologists to boot. Then a friend came to me and had me look into Morgellons. I was shocked and beside myself to see images of what I have and that there are other people out there that suffer as I do with a skin condition that has no rhyme or reason for being. I was told I had things like: bed bugs, scabies, an allergic reaction, dermatitis and ended up getting MSRA on top of my sores. So the attention was now focused on that the sores were do to the MSRA.Then after 7 months of suffering with that the MSRA was cured and now is colonized. BUT…. then why do I still get these sores??? I question everything and have considered signing myself up for a nice white jacket awhile ago. Because the MSRA is gone and the sores remained I was accused of horrible things. I was accused of being an addict and my family wanted me to seek help for a drug problem I don’t have. It has been an awful year and I find myself no longer telling people I feel bugs in my skin cuz this is talk of a crazy person. RIGHT!!?? The sad thing is I was tested for disorders and a lot of different diseases and I have no diagnosis of being OCD or bipolar. I know I’m not crazy but without answers I feel so helpless to what is wrong with me. I was so depressed and was so tired of the painful sores. But then add the sharp shooting stabbing pain to my right ear. also I have horrible migraines now. I get fatigued a lot and it doesn’t make any sense cuz I other wise seem completely healthy. So as I continue to seek a Dr. who actually cares about all of my symptoms. I find no real help or answers. I hope that more research will be done and more doctors recognize this as its own disorder.

Contact the Charles E Holman Foundation, they have a facebook page as well as a website. I have heard they are doing some referals and support. Another Facebook group for good support is Morgellons Alternative and Plant Based Tehrapies by our friend Tina Engressia. You can send her a PM on Facebook

I am not a Doctor or a Nutritional Expert. I recommend all people check with their doctor before taking any supplements or vitamins. I am only a volunteer. I claim no cure either. No Factions. No Conspiracies. All are welcome if they are civil. I'm not interested in blame, only living a life symptom free.

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